Share your thoughts on statins

Parent Cafe
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Actually, I haven’t had the exertion problem that long. It’s far more recent - perhaps two years? I don’t really recall when it started. I just assumed it was from the old asthma diagnosis and didn’t worry about it figuring it was just aging until the combo of walking around Jordan (tons of hills) and jogging ponies here at home for sale videos - another thing I do a few times per year - left me realizing how much it’s progressed. The fact that it isn’t asthma of some sort - that the old diagnosis was flat out wrong - came as a huge surprise - other than answering the question of why I was never bothered by attacks the same way others with asthma are.

Since then I’ve “played” around with it a little. The problem comes when my heart rate exceeds 110. Below that I don’t feel a thing. Above it I start to get winded. Above 125 I get really winded. As far as I know, that could all be normal, esp since my resting rate is generally in the lower 60s, sometimes upper 50s. I haven’t taken much time to look into it - a quick google search in times past showed nothing. What appears to be different is the small amount of exertion to reach 110+. The same set of stairs or hill that will have me at 115+ will have hubby at 85 - using the same phone to check rates.

Adding more to my routine doesn’t improve a thing. It might make it worse. I don’t exactly test a bit “more” too often.

Of course, I’ve also contemplated moving to a flat area and getting a single story house. In that situation, I can forget there’s a problem breathing-wise. Keep things flat and I can (and do) walk miles. I do that with the small hills around here daily too. I just notice the hills and others walking with me (also daily) do not.

My phone’s app tells me I’m in the top 18% of all users currently step-count wise with the average person having 38,880 for the past 7 days and my current count being 56,834. That’s with a couple of short days in the past 7 from still being with my mom, and my phone notoriously undercounts when in the house or other short distance areas (compared to dh’s and my boys’ phones).

I don’t think I’m out of shape for “average” things one does. Hubby is two years older than I am and only has a weekly step count of 32,894 right now. Several folks at work get less “average” exercise and don’t have similar issues with such small things. But whatever. I don’t have the joint pain or digestive issues they have. We all get something I guess. My body just prefers the road less traveled. Such is life - and says nothing about statins!

@MACmiracle I will have to google laryngomalacia sometime when I have time. At the moment I’m waiting for that last load of laundry to be done so I can call it a night. I have the same screen name on a previous forum, so you could be remembering correctly. I’m not on that one any longer, but have stuck with this one even though my youngest is a senior in college now because I’ve been contemplating doing volunteer college counseling at my school next year and want to keep up on all sorts of college topics.

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My PCP wants me to take a statin, I do not.

I do not have a thyroid anymore (stage 1 cancer, removed a couple of years ago). I had an endocrinologist and she saw me through that. Then she moved away, so I need a new one.

That endo OK’ed my current diet, which I’ve been on for about 8 months (have lost 45 pounds so far). That’s mostly meat, some dairy and a LOT of veggies but no sugar, flour, rice, potatoes. (Keto, low carb, Atkins - whatever you want to call it).

I’ve also made a point to eat soluble fiber regularly - chia seeds, okra, etc.

I feel great and I walk long and often for exercise, cycle in season.

I got a 1.1% risk on that ASCVD calculator.

I think I want a new endocrinologist who can advise on thyroid AND cholesterol. They’ve been tested for and managed separately and that doesn’t seem like a good idea.

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I have to think about things a bit more. Med school lad and I got briefly talking today and he started mentioning some genetic things possibly associated with my dad having had a heart attack at 47 and my grandfather dying from one in his 60s. I told him we needed to look more in depth with all of that (as it’s eventually his genetics too), but perhaps statins are a reasonable course of action in my circumstance - if it seems that reducing cholesterol helps with those specific known incidences. (I wonder if they can be tested for…) He was going to look up some more about what he’s studied in a few days.

What I really don’t get is my wondering about it all esp due to what’s going on, my friends thinking similarly (though they are friends, so could be just saying what they think I want to hear…), and family history that seems to add up to it all possibly being an issue - even quickly noted by a first year med student, yet being told it doesn’t need to be looked into by docs at a high rated hospital. I seem to be missing some key component that they see. They tell me it’s because I’d be fatigued if vascular were an issue - I’m not. (Shrug - I guess that might be needed. I have no idea how important a piece of the puzzle that part is.)

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Could you be anemic?

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Creekland, I’m sorry you are dealing with those symptoms I am thankful you are not fatigued.

Fatigue sucks. Mine is getting better as my condition usually improves with age. But for years, no matter what I was doing, I would always be thinking about when I would be able to lie down.

With the family history piece, statins are usually advised. …maybe even without high cholesterol.

Have you thought about seeing a physical therapist to help you try to get into the best possible shape even with the breathing issue? I started exercising about four years ago with the hope I could cure my problem. I haven’t but it is much better. It feels good to have confidence that my body won’t let me down on normal day to day stuff.

In the beginning, I had to go so slowly and so lightly and I would still often feel exhausted and useless for the rest of the day. A physical therapist could have made that process easier.

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@creekland, have you been evaluated for pulmonary hypertension? Breathlessness with mild exertion is one of the symptoms.

https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/symptoms-causes/syc-20350697

It is so frustrating when you’re told you’re just”out of shape” and nothing more is done to help diagnose you. Argh!

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Agree with HImom. You need to see a specialist and if it were me I would start with a pulmonologist.

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In late 80’s I was denied increase in life insurance due to high cholesterol. I was in my 30s at time, both parents had heart disease. An MD confirmed high cholesterol. Initially tried diet/exercise without much success. I was put on low/mod doses of statins with no side effects. I’ve been described as cholesterol making machine, gotta love genetics.

Since starting on stains I saw MD regularly for monitoring of cholesterol. MD also did annual physicals and treadmill in alternate years. Blood, treadmills all good. In late 90s, although totally asymptomatic and felt I was in best health of adult life, I failed treadmill and eventually ended up with triple bypass. 2 weeks after bypass, chest was reopened due to staph infection. Surgeon commented at time that bypasses looked perfect. After recovering I went back to work. 15 months later it was determined all bypasses failed. A stent was put in one of the blocked arteries. At time of bypass my LAD (ie widowmaker) was 90-95% blocked, and to my knowledge, it remains blocked by how much I do not know. At that time I was given choice of more surgery or medical approach (eg drugs), I chose drugs and take several.

Since late 90s I have taken highest daily dosage of Lipitor allowed. I do not have any known/visible side effects from any drugs I take. My lab work is perfect. Besides drugs, changes in life style (eg reducing stress (I retired), diet, walking), I’ve made it almost 20 years. Although I have no way of knowing what weight each change in life style played on making it during these past years, I think statins (and reducing stress) have played enormous part in getting me to this point. That said I do think one should start conservatively (eg diet/exercise) before trying statins. Statins have serious side effects which anyone taking should immediately report to MD. As a note I’ve never had a heart attack, but probably just jinxed myself. lol

I can empathize with your frustration. After I survived staph infection I was symptomatic (eg chest pain, low energy, shortness of breath upon exertion, etc). I told every MD I was seeing at time (eg cardiovascular surgeon, cardiologist, infectious disease MD, nephrologist). All of them felt that I had been to hell and back and that it would just take time. Various tests showed everything was okay. It was very frustrating period. When I saw my cardiologist 15 months after bypass and again mentioned symptoms he felt that maybe there was new blockage, or something wrong with one of the bypasses, he suggested cath lab again with outcome noted above.

I eat lots of chicken, fish, salad, nuts. I do cheat occasionally. I have red wine with dinner. My wife has me eat a small piece of dark chocolate every night with dinner. Whether it’s helpful or just my wife’s way of getting her chocolate fix in I don’t know. I keep my weight down. Try to minimize grazing.

C reactive protein is not heart specific, out of range result could be due to lots of conditions. I had this test routinely done prior to bypasses, results never suggested any problems, heart or otherwise. MD stopped this test after failed bypasses. There was no further need to check for possible heart disease anymore as it was a known at that point. According to link below, even hs C reactive protein is not specific for heart disease.
https://labtestsonline.org/tests/high-sensitivity-c-reactive-protein-hs-crp

I’ve never taken CoQ10, but it may interfere with some meds effectiveness. So I’d have a chat with MD before I added it to daily regimen.

Not to be disrespectful to your med school son, but I would not be listening to a med school student. IMO, med school is tons of broad based science combined with limited clinical exposure in a wide variety of areas. I tend to think of med students as people who upon graduation they know a whole lot of stuff, but they don’t know anything. (There’s an old saying that the worst day to be admitted to a teaching hospital is July 1, which is traditionally the first day that newly graduated med students show up for work.) The medical powers seem to agree as upon graduating med students typically spend 3-5 years in supervised training in order to help ingrain into them just one of the many med specialties.

That’s my statin story and some random comments. I wish you well and hope the light bulb goes on in some MD’s head soon. From posts above I think a pulmonologist could make a good starting point, unless perhaps you first need a referral from say IM MD. I’d have a list of symptoms in hand, I wouldn’t want the appt to end, leave and then go home having not mentioned something. Good luck.

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National Jewish is one of the top lung hospitals in the world. They are located in Denver and have probably saved my life. They helped me when none of the other places or MDs could. They are used to “complex” and puzzling cases and will continue to work with you and your healthcare team after you return home. Send me a PM if you’re interested in more info. I was treated there from 2000 to 2016 and have had great experiences with them there. They do participate with BCBS and were participating and preferred providers so other than travel, it was as if I was seeing local in-network providers.

Grace Ann Dorney Koppel was told she was just “out of shape” and would feel like a “new woman” if she lost a few pounds. She lost the weight but was still breathless and went to Johns Hopkins to get diagnosed with COPD and also lung cancer. She’s been treated for both and is doing much better now.

Please follow up on this! It is YOUR body and YOUR health. It’s not fair to you or your kid to expect him to figure out what’s going on. Get the best experts–you deserve it and so does he.

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Just getting a chance to catch up now - been on the road today, then thought it was nice to pretend I’m a little bit social with my guys. :wink:

@LBowie Definitely not anemic. That gets tested at every blood donation and the twice per year “basic” results are tested.

@MACmiracle I fully understand you with fatigue. When I was on iron supplements (for a couple of months) THEN fatigue set in. At first I thought I wasn’t taking enough iron since I wasn’t taking as much as suggested, so fatigue, chest pains, joint pains, etc all set in. Realizing the only thing I had changed was the Fe, I stopped it and all of that went back to normal. There’s nothing like making things worse to realize just how pleasant normal is! The experience has definitely helped me sympathize with co-workers and others who suffer from those things.

My body actually doesn’t let me down on day to day stuff except for the “extra” requirement things (like stairs, hills, heavy lifting, etc). I just need to let my breathing return to normal after those. We spent a day walking around the Aquarium yesterday and I was surprised to hear how many were complaining of being tired near dinner time (not counting my mom). I think perhaps because I’m on my feet all day at work and we have a (hobby) farm at home, my body is perfectly fine with keeping up typical activities all day long. I have tried (and still try) adding more stairs/hills figuring at least I can stay in the shape I have if I don’t quit (even if it doesn’t improve).

@HImom No, nothing except asthma testing has been done - well - and brain scans (MRIs), but that’s due to the primary tumor and the worry that there could be more when hearing the pulse became an issue. It was rather relieving NOT to have an additional tumor, but yes, frustrating to have them call it quits when that wasn’t the case. I’ll admit I assumed that they would continue to try to find the cause. I thought that’s what happened when things are off. Apparently not.

BUT, I also haven’t brought up the breathing as a major concern (it was mentioned) because it seemed to fit the progression of the asthma diagnosis 30 years ago - being told it would get worse as I aged and assuming that’s what was happening when things started to show up. It’s only since I’ve found out that there is (and probably never was) asthma that I’m wondering what causes it - a totally different issue than all the rest. I don’t know if it’s related to statin/cholesterol things or not. I will look at your link shortly. Denver is quite the distance from us, but I appreciate your thoughts about it.

@Jugulator20 That was very helpful, thanks, and sorry you’ve had to deal with it all! Genetics sure can be rather cruddy at times. I fully agree with you regarding med school students and their knowledge (or lack thereof), but 'tis also true that my lad is one I can talk with, hypothesize with, test things out with (though the Allens test he did - and more -
was only an “assignment” from med school over one of his breaks - he needed practice subjects and our family volunteered), and generally brainstorm with without him feeling I’m a stressed out hypochondriac. He has more knowledge and access to it than the rest of us minions do. There’s a lot to be said for that. One uses what they have access to.

This evening two of my lads, hubby, and I did a few stairs and a walk/small hills together and compared pulse rates. The two lads and I were quite similar in the 110+ range though I was the only one breathing harder. Same walk, same steps. Hubby - the mostly couch potato one of us comparatively - topped out at 80+. Can’t say any of us would have guessed that one, but that’s what makes actually doing experiments interesting (for those of us who are naturally more science minded).

I think my heart is doing exactly what it should be doing (increasing/decreasing as needed). It’s the rest that contains the puzzle breathing-wise and maybe not related at all to statins. That part is definitely still foggy. Well, the whole thing is, but…

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A mere week (+) to go until the doctor appt and just arrived home, so should have time to go back and look at links again, etc.

Should the main question I consider be, “Does lower cholesterol help?” as it seems that statins do lower it, but it’s not clear regarding if that helps?

Also still debating whether or not to pursue more on the breathing issue… It’s definitely a constant with hills/steps or similar, even when my step count puts me in the Top 2% of All Samsung Health users (well over a million just with its monthly challenges) without issues whatsoever. I have no idea what causes it, but it’s not being out of shape in general. On the other hand, it also hasn’t killed me so might not be worth bothering with at this point in time (with health issues on both parental sides of our family taking up a considerable amount of time). I have remarked that all I need to do is move to a flat section of earth and buy a rancher and I’d rarely know there is a problem (only when carrying heavier things or other similar tasks increasing pulse - get some hired help and I wouldn’t even have that issue).

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Lol. Just tested and I got my cholseterol from roughly where yours is to 30 points lower, dropped the LDL, too. I have no idea what exactly did it, since I tried a variety of things, from stringently cleaning up my diet (this took a certain tolerance for research, plus I have a dietician,) to fish oil, plant stanols, etc. And exercise.

AdvMom posted this earlier and it’s also what my doc uses, from the American College of Cardiology. The target is under 5% risk of a heart attack in the next ten years. (It may be closer to 4%.) http://www.cvriskcalculator.com/ Play with it. Clearly, one needs to be far lower in totals and keep BP at guidelines, too. For my age, I’d have to drop another 30 points, to get close enough.

I’m no longer as afraid of statins, my doc agreed if there are muscle pains, we’d adjust. I’m retesting in 90 days, first, to see what I get to. I don’t think they know how statins/lowering cholesterol exactly works. The med isn’t perfect. But the research shows the lower numbers yield lower risk of an incident.

As for the other issues and step count, that’s not it. Research talks of aerobic exercise, not the usual default movement. One can go fine on flats, but not have the developed leg muscles for hills, stairs, etc, which adds strain. It’s not being in or out of shape, “in general.”

One has to commit to a concerted effort. Think about it.

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Just rechecked that site and I’m at 1.9% so that seems to side with “not an issue” right now.

One would think I’d have the leg muscles for the small hills and couple of flights of steps that I do multiple times every day… or one would think others with less basic/general exercise would also lose a similar amount of muscles, etc at a similar age, but I know humans are individuals, so who knows? It very well could just be the way my body is.

On a totally unrelated note, who would have thought we’d have a two hour delay in April! I suppose that gives me a nice “back to work” gift, though it’d have been even nicer to have spent that time sleeping longer. The weather is weird this year.

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My sister in law ( Irish heritage) learned she has inherited hemochromatosis-
Apparently, 1 out of 9 carry the genes for this condition- impairment of body’s ability to absorb iron, causing too much iron.
@Creekland you mentioned feeling very ill when you took iron supplements.

Shortness of breath is listed as one of many possible symptoms, which can vary greatly.

( easy fix donate blood )

http://www.hemochromatosisdna.com/about-the-disease/signs-and-symptoms#.WsP8RIEpCEc

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@SouthJerseyChessMom That’s actually something I thought would be a possibility when 23andMe genetic testing showed my lads (3) are all carriers of the gene. BUT then I got my results. Nothing. The lads got their carrier status from hubby who is also a carrier and has no such issues with Iron. I have to watch my intake of it (from meat too) or I get fatigued and sore muscles even without high Fe readings in blood tests. He doesn’t and his Fe results are higher than mine. He’s two years older, far more of a couch potato (due to his job), and has no issues with stairs or the hills we do. Go figure.

I’m giving serious consideration to moving somewhere flat. Hubby’s wanted to move next to BIG WATER anyway, our kids will have finished college, and having just returned from a flat area letting me realize how much nicer it is to not have issues keep that solution at the top of my mind. For right now we need to stay relatively near parents, but with MIL entering hospice this past week and unless my own mom gets a miracle from immunotherapy, we could be far more “free” in the relatively near future.

I’m still on the fence with even going to next week’s appt TBH. I can’t see much coming out of it that will help and I might need to head to my mom’s anyway if this new drug she just started has side effects like the other did.

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Just thought I’d report that I had mine retested, with the more detailed LDL particle size test. I’ve been on the keto diet for 10 months and lost about 50 pounds, feeling great. So been eating high fat, moderate protein, only carbs are fiber-rich veggies.

My cholesterol came down to where my doctor is no longer saying the “s” word. I am thrilled. I wasn’t going to take them anyway but now SHE doesn’t want me to either.

{happy dance}

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Wow, @OHMomof2, that’s awesome. You must feel wonderful.

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@OHMomof2 that is some impressive news! I’ve been following keto for couple months and concerned about LDL given the amount of fats involved.

I’ve never done the LDL particle size test.
Do you still have elevated ldl numbers, with enough of the good “ldl” ?

I know from the Facebook page “beginner keto” group people report reduction in ldl eventually, usually after a period of higher levels?

Congrats on losing 50 lbs! Impressive.

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@OHMomof2 Good to know - thanks for sharing! I’ve mainly continued my otherwise healthy diet (plant based with some meat) as I have in most of my adult life due to my family line having oodles of diabetes in my heritage and trying to avoid it. My problem has been traveling. We never watch diet (much) when traveling and lately we’ve been doing it more - often to our parents who definitely don’t eat healthy diets, esp when we visit. We don’t get our regular exercise in when we’re with them either. I’m not really sure how to overcome that TBH.

Part of me figures that FIL (not a blood relative, but still…) eats at fast food once or twice per day (dragging us along when we visit) and is 89 years old + still active, albeit with significant heart issues going back several years. I have to wonder how much is diet, how much is staying active, and how much is genetic.

That said, my mom dropped a ton of white carbs (sugar, etc) from her diet with her cancer diagnosis (scared straight?), lost significant weight (from the whole experience), and is no longer classified as diabetic. A lot of the weight issue things she’s taken for granted in her life have disappeared even as the cancer progresses (though we’re currently waiting to see if Keytruda might be working on that part).

I think not being drastically overweight - however one manages - is a big key. I am still working to drop pounds here at home. I’m at the BMI border of overweight and obese. It gets ruined by travel when I can put on 3/4ths of a pound per day, but at least it still comes off when I return to my regularly scheduled eating.

In Sept I’ll have new numbers and will see where I’m at. Then I’ll need to ponder options. The doctor has made clear where she stands based upon the upward progression of the numbers and family heart disease history. My med school son thinks her thoughts are valid based upon studies he’s seen and genetic traits that can run in families.

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Creekland, since you are travelling more maybe you could get a travel size smoothie blender to make sure you get good nutrition to balance the poorer eating while travelling.

I’ve adjusted my diet a second time because something I’d been eating as part of my low cholesterol plan started worsening my headaches. I decided to add in a veggie packed green smoothie everyday and cut out some other stuff that I though could be triggering headaches. I just blend organic kale , Swiss chard, maybe some other veggies, with a fruit. I don’t know if my LDL will change but I have seen some positive changes already.

I have to go in for bloodwork soon.